Trust me -- I'm a Super Hero

3rd round of Rituximab treatments today, only one left after today.

The photos tell the story, he's happy, and yes, he is a super hero!

I think I found this shirt while on a grocery run, I saw it and thought it was perfect for Austin.

And we wait for the Tylenol and Benadryl to take effect.

Lucky me I get to sit facing a clock :-) 

And it begins, again

Who needs sleep?

Apparently not I, not Austin.  I’m surprised with what we are getting by with at times, I’m beginning to think it’s over-rated.  Overall at this time you’ll get two-thumbs up from both of us.

Yesterday morning we had our Infectious Disease appointment and he got another Pneumococcal vaccine.  We came home with a few more papers and information sheets.

I’m typically not one to read the sheets intently at first, I don’t want to be influenced by what is in print.

Last night around 9 pm I thought his face looked a little fuller but overall he seemed fine.  He is still an eating machine. He was tucked in and we didn’t hear a peep out of him.  At 10:30 he was up and restless, his face still looked fuller but now he looked like he had a fat upper lip and he told me without prompting “I feel dizzy”.  He also complained about his back and right side hurting.  At that time I pulled out his information sheet on the vaccine and when the recommended protocol was a trip to the ER I did what I was supposed to do, we went to the ER.  He at no time had any problems breathing, no coughing, nothing else that caused concern but the rash that had appeared when he was in the hospital, although it was faint, looked like it was coming back.

I do think I finally discovered what caused his allergic reaction in the hospital. At that time it was very difficult to tell, three vaccines required before the removal of the spleen, the blood transfusion he had prior and during surgery and the meds used during surgery all complicated identifying what created the allergic response.  Now I do believe it was the vaccine.  We are probably fortunate that he’s on steroids so that probably lessened the effects. 

While in the ER I did notice his blood pressure was slightly elevated, which to me is a sign that yes there is pain.  Heart rate is high but lately it is always running over a 100 so it’s difficult for me to use that as a measure.  They did treat with Benadryl and gave him pain meds through an IV.  Once again they took numerous tubes of blood.  Through his electronic health chart it was interesting to note in a little over 12 hours how some of his numbers had changed.  Earlier in the day the WBC was elevated, over 15, now it was a little over 10, just outside the normal range.  Hemoglobin that was 9.8 in the morning was now 8.9 – what a difference just a few hours made and I’m not sure what made the difference.  Could it all be related to the vaccine?  I don’t know.

He drank almost a half of glass of the water with the contrast stuff in it for the CT Scan. I think he liked the nurse and he was trying to please her.  I’m surprised we got that much into him.  He was a pro at the CT scan and it didn’t take long at all. Thankfully his little ER room had a TV and he lucked out – the TV only had limited channels and the last channel in the list was the History Channel. I don’t know what we’d do without Pawn Stars to pass the time J.

The CT scan showed a blood clot in the splenic vein (according to the surgeons downtown nothing to worry about), constipation (probably a side effect from the Rituximab treatments), a small Hiatel Hernia (really – we’ll just add that to his list of health concerns) and scattered diverticulosis without diverticulitis in the colon. Around this time they forgot all about what brought us there in the first place. 

There was a discussion at first to admit us, in which I noted that I would like us transferred downtown – which they didn’t think would be possible - I think that’s what prompted the phone call to the surgeon team downtown. Around 5:30 am we were discharged with instructions to pick-up MiraLax and Benaydrl from the pharmacy and follow-up with our primary care physician (which I don’t think I’ll do – we see enough physicians regularly – I think they’ll be able to cover this).

Today, if I poke him in the right side his demeanor changes, maybe it’s from the crap traffic jam. I did slip some MiraLax into his yogurt this morning, pushing grape Juicy Juice (always diluted with water). 

I think I got at least two very tall (batman) glasses into him today.  Now, all I need is for the crap fairy to visit hoping it’s not at night, doesn’t happen on treatment Thursday and he recognizes the signs to move quickly to the bathroom. Simple wishes, simple things, time will tell if it all works out and no matter what happens it will all work out.

Sometimes it feels like we can’t win for losing. I recently watched the Shawshank Redemption (for probably the 15^th time) and a quote from Red sometimes resonates in my head ~ “Get busy living or get busy dying.” That’s all we need to do just stay busy living.  No need to feel sorry for us we are just playing it out of Austin’s play book, the simple things keep us happy, normal keeps us happy and when we can’t have normal there is nothing we can do to change that, we can only roll with it. Austin has no worries, no fears about what tomorrow will bring, he is taking it one day at a time and the only thing that does matter is today.

So don’t feel sorry for us, in the words of Red, “Get busy living”.

I’m going to close with just a couple of samples of words/phrases I haven't heard Austin use before, he does crack me up at times, he told me the one about blushing last night.

A: Do you remember when I was a baby?

M: Yep, I remember when you were a cute little baby.

A:  Stop, you're making me blush!

***

M: It is good that you drink a lot of juice.

A: Yep, I need to stay well hydrated.

Blood Draw Monday 1/27

We had an appointment downtown this morning with infectious disease.  It was something scheduled when we were discharged from the hospital.

I planned accordingly, planned for a slow drive in and we made it with time to spare for the appointment, too bad the doctor didn't.  Another doctor came in until ours got there and asked if I knew what we were there for, which my reply was "No, I didn't make the appointment it was made for us".

The doctor noted that this appointment is typically done prior to moving to Rituximab treatment, they want to make sure patients don't have Hep B - well that's all behind us, they did that the day before we started our first treatment. Geez, do you think I should ask for my $30 co-pay back (they consider this doctor a specialist, just another way to make me pay more for health care).

The did give Austin another booster shot, one more for Pneumococcal Conjugate Vaccine and did another blood test.  At least I got them to do our weekly blood draw at the same time so the poor kid didn't have to be poked twice for blood today.

Hemoglobin is trending upwards, we were at 8.6 we are now at 9.8 - a good thing - just hoping it will continue to improve and then stabilize. We'll have to wait and see what happens 6 months from now. Still other things way out of whack with his CBC but I only truly understand what the hemoglobin means as it relates to his Hemolytic Anemia.

Next treatment is Thursday, we don't have "Throwback Thursdays" we have "Treatment Thursdays" one day I just want a plan old Thursday :-).

Oh for Goodness Sake ....

I said I was going to write a novel, I just didn’t think it would happen so quickly.

The family has an early schedule today. Genevieve has a hockey game at 8:15 am (at a rink an hour away and they are required to be there one hour before the puck drops) and Natalie started work at 7 am this morning.  I was clearly delusional last night thinking I could sleep in since I was staying home with Austin.  Once Genevieve was up and moving on the main floor of the house (about 5:45 am) the “baby” aka “Austin” monitor picked up a lot of activity in Austin’s room.

Being the wonderful mom that I am, I simply put my head under the pillow thinking I’d buy a little more time. After all, at this point in my life I’m not competing for mother of the year, I just want to survive the day, then the week, then the month, then the year; that’s as simple as it gets.  The pillow didn’t work, I ended up assuming my post as Kitchen Sentry by 6:40 am.  In the first half-hour Austin was up he had already eaten a bagel, a pop tart and a hot dog.

Then it was action time, what am I going to do to control this, can I control this?

Quickly my fingers went into action to discover what I could find out about Prader-Willi Syndrome (PWS).  Could there be strategies for PWS that will help with Austin’s increased appetite? I’ve spent a little time on Prader-Willi Syndrome website, pwsausa.org. I did resist the urge to call the crisis number listed on the support page.  Honestly, what I might deem as a crisis may not be a true crisis, but I must say just seeing a number readily available was reassuring, not so much for me but for those families who deal with PWS day-in and day-out.

Clearly I’m not quite ready to start locking refrigerators or cabinets, but soon I might relocate some snack food so Austin won’t have easy access. I’ve got to take a close look at what’s available in the house to snack on and I’m going to have to try to move in snacks with a much lower calorie intake.  In addition, I’ll allow some grazing but I will limit quantity.  It’s really a pain in the arse because Austin is somewhat of a picky eater – I wished he liked carrot or celery sticks. He does like apple slices so that’s one healthy snack I will promote during the day.  

I’m hoping I can encourage him to drink more fluids, problem is he doesn’t like water.  Besides chocolate milk, milk I have him drink with a meal and one Mt. Dew during the day (I switched to the little cans, I’ll let him have two, which equals 15 oz. a little more than one regular can of pop) he will only drink Grape Juicy Juice (which I dilute with water – at least that should reduce calories). I may try to switching the Mt. Dew to the diet version although I don’t like artificial sweeteners and I'm not even sure if he'll drink it. Bottom line - I'm beginning to feel like I’m just in a no-win situation.

For all the weight Austin lost while in the hospital in December he has put it all back on, including a few extra pounds.  It does help if I assume my post as Kitchen Sentry.  I’m thinking about doing a visual schedule for snacks but I think I might need to do some charting first, identify if there are any “peak” times for hunger and how long can he manage between snacks.  You'd be amazed at what I use excel for - not your typical business application - just an opportunity to keep my skills sharp even though I believe it's doubtful I'll ever re-enter the workforce. 

With all that we’ve been through Austin’s behavior has been amazing but I fear we’re at a tipping point and it’s all going to be over food, rooted in the steroids he needs to take to treat his Hemolytic Anemia.

I know it’s going to be a very long day when at 8:28 am Austin's already asking “What’s for dinner babes?” Not once, but multiple times. 

And on that note I'm beginning to wonder if I should just go back to bed and put the pillow over my head. :-) 

Winter Wonderland …

I’m totally over it!  Today is our fourth snow/cold day this year, this month, I should be sleeping in now but I was wide awake so it was time to start moving.  Time to enjoy the quiet before everyone else gets up.

Wednesday night I did the Hockey Practice run, a drive that might take 35 – 40 minutes, well it took us 90 to get there.  On the bright side it was only 50 minutes to get home with only one Jack-knifed truck and three vehicles off to the side – what a positive reminder that slow and steady sometimes does win the race.

Austin had his 2^nd  Rituxan (Rituximab) treatment on Thursday and thankfully with the weather and traffic conditions we weren’t on the road during peak rush hour.  We still ran into a small back-up with speeds ranging anywhere from 10-55 mph.  We arrived with time to spare to stop at Biggby. I got Austin his Mt. Dew and picked up my Mocha Mocha, which ended up being free, another indication that we spend far too much time at Henry Ford Hospital.

Dad ran into traffic as well but arrived in time to go through the start of the process with us – we go to room 5 where they put in the IV port and take blood if any labs are ordered. It took a little longer because they had problems getting the IV port in, said his veins are probably scared from all the blood draws and IVs. Four tries and three nurses later we were finally able to move to our treatment chair.

We do a lot of waiting, first we wait for the pharmacy to send up his meds. Next we wait for the Benadryl to take effect, than we wait for the Rituximab bag to empty into his body.  They still have to start the drip very slowly and watch for any side effects, so far there have been none that have caused us to slow the process or interrupt the infusion. 

We had to be there by 10 and at 11:15 we still hadn’t started the infusion yet. Austin was hungry.  He’s always hungry lately, more than usual, probably due to the steroids he takes.  I made the run to the Coney across the street and ran into a waitress who remembered me (and Austin’s order) and was once again asked “Why are you here?” Honestly, it’s not by choice.  Infusion started at 11:40. Dad stuck around awhile but then we sent him off to work. The delay messed up my schedule, my planning, so Gramps came to the rescue and picked up Gen from school

The Benadryl makes Austin tired but never knocks him out. This is the worst side effect we see so we can’t complain. Although, today after spending 4 hours in the Chemo Suite (lab or whatever you want to call it) I feel like I have side effects – must be in my head. We had a different nurse today but our nurse from last week (Darlene) stopped by to say hello, as nice as our staff is it’s not a good sign when you become very familiar with everyone. Darlene I learned last week is Canadian, from across the border, the dead giveaway was how she pronounced our last name “Nada”.  No one in the states gets “Nada” out of “Nantais”,J.

The Chemo Suite isn’t exactly the place anyone wants to be, everyone is dealing with something, waging their own war against cancer or something like what Austin has. It’s somber but not depressing because I’ve never seen the look of defeat on anyone’s face. Many are there alone which makes me sad. I know sitting by Austin’s chair I can’t do much but I’m there, if he wants more ice for his Mt. Dew I can get it, if he wants more crackers there is never a wait for the nurse to come by.  Some people might tell others not to come along, many may not want to go, it’s like going to a funeral home, nobody likes to do it but the reason for going is to support a friend or loved one during a difficult time. If you’re given the choice, take the time, go, and go even if all you do is sit quietly by their side.

As for treatments we’ve got two down and two to go.  They did another blood draw Thursday, before the treatment, hemoglobin is at 8.6 (up from 8.3 on Monday) which is good, still a long way off from normal. I’d be happy if we could just hit the 10.1 number we had after the spleen was removed.  White Blood Count (WBC) took a huge jump from within the normal range (just under 10) to a little over 15, not sure why it jumped so much from Monday but from what I understand the steroids can have an impact on WBC, our treatments may have an impact as well.  

I’m a little guarded on the numbers – we’ve gone up so many times only to go back down I just don’t get overly excited.  I’m hoping and praying this works cause I fear we may be running out of treatment options.  Thankfully, this doesn’t impact Austin at all, he’s all about the here and now. If his simple needs are met he’s happy, he has no worries about what tomorrow will bring. That in a way keeps me a little grounded, helps me focus on the here and now, what truly matters. He is thinking about his birthday, which isn’t until the end of March and Mom’s putting him off, reminding him we need to get through dad’s birthday in February before we think about Austin’s.  Told me he wanted a new bed sheet set – really? I told him I thought he was good on bedding.

This week I was a little better prepared for the after treatment scenario.  I borrowed my sister’s baby monitor (she had one for the grand children) so I rested better in my bed instead of on the couch. He did well, only complained of feeling a little dizzy (he could have been nauseous but I don’t think that’s a word in his vocabulary, just like when the doctor asked him in the hospital “does your abdomen hurt?” he won’t ask what’s an abdomen he’ll just say “no”.)

Monday we have another appointment downtown at the hospital, something that was scheduled with our discharge from the hospital.  I don’t even recognize the Doctor’s name, there were two large teams of doctors who always made the rounds.  This doctor is with Infectious Disease.  I’ve debated cancelling the appointment but I didn’t, we will go, but if it turns out to be just a waste of time, another trip, another co-pay, for someone to simply ask me “How is he doing?” I’m not going to be a happy camper. Yep, doctor or not, you might want to say a prayer mama bear doesn’t give him a piece of her mind. 

Monday is also our blood draw day so I’ll figure out what I need to do to have it done there instead of making another trip to Wyandotte Hospital.  

I’m tired of doctors, tired of hospitals, procrastinating for myself just a bit. It’s that time of the year to schedule my mammogram and my full-body check (dermatology – history of skin cancer and melanoma in my family) I just don’t want to have more days of the week with appointments than not. Our calendar used to be filled with Gen’s hockey, now medical appointments are almost as frequent as hockey, I like hockey much better J.

“A hero can be anyone, even a man doing something as simple and reassuring as putting a coat on a young boy’s shoulders to let him know the world hadn’t ended.” ~ Batman
Austin is my hero!

We sometimes measure time by the bag on the right.
I

Breathing Easier …

We were at the hospital for the blood draw nice and early today.  Took Dad along so he would understand the process.  Had the results in my inbox by 9:45 a.m.

Good news (at least for the numbers I watch):

• Hemoglobin is 8.3 (was 7.6)
• Red Blood count is 2.55 (was 2.41)
• White Blood count is 9.3 (down from 14.3, we are actually in the normal range for a first time in a long time).

Hopefully, my heart won’t drop any more today when the phone rings.  Next treatment is on Thursday, since we had no problems with the first one they should be able to transfuse this one a lot quicker, might only take 2.5 to 3 hours (I’ll take that J).

What’s up with that?

We’ve noticed something very strange going on in the Nantais’ household, lately Austin’s speech, language and communication has drastically improved.  We noticed at first when he got out of the hospital (December 17) but even since then we’ve seen more improvements.

Seems like Natalie, Genevieve and I are always raising our eyebrows or saying “Did you hear what I just heard?”

His speech is less cluttered we'll say, clearer, he isn't as soft spoken.  My mom actually noted how she can better understand him. He has also has been mimicking his sisters more often, just to be annoying to them, when it comes to the language, he does it at the appropriate time in the appropriate manner.

Another thing his comprehension and expressive language I believe has improved. The other morning I went to get a box of Kleenex from our cellar. From the basement landing I tossed the box and didn't make it to the kitchen floor.  I noted out loud that I was "Throwing like Austin". Austin was on the main floor and quickly responded “Hey! I heard that!” He completely understood that I was joking and making fun of him, and responded appropriately.

In the hospital, he was immediately placed on antibiotics, short-term, the original concern was his Hemolytic Anemia could have been brought on by a virus or infection. They later added a low dose of Folic Acid (1 mg a day – very small dose).  We were not discharged with this med but we just added Folic Acid (1 mg) back to his home medication schedule because it may help the production of new red blood cells.  The other med added was the steroid, Prednisone (because our numbers aren't holding up we've discontinued the tirade down, actually went up from 40 mgs to 50 mgs a day this week.) Doses in the hospital were much higher and at first IV driven.  This was all added to his normal med regime 1-10 mg of Abilify in the morning, 1-10 mg of Paxil in the evening.

Now typically steroids to not have a positive effect on those with fragile X (and/or autism), typically more agitation, more negative behavior is exhibited, so I’m not really thinking it’s the steroids but at this point I don’t know.

Last night we had a problem with the kitchen sink’s hose, it wouldn’t turn off.  So to avoid being sprayed with water if I turned on the kitchen sink I pulled the hose out so the nozzle was facing the drain.  Later Austin walked into the kitchen and said “Wow, that’s not right, I’ll fix that.” and walked over and put the hose back in its regular position.  Natalie and I just looked at each other with raised eyebrows, as I mouthed to her “Did you hear that? Did you see what he just did?”

Now, over the years, there has been research on the use of Folic Acid for those with fragile X syndrome, from ages one to 54, and the dosing was much higher ((minimum dose was 10 mgs, this was the most common dose, highest dose was 250 mgs) than what Austin is taking, just 1 mg a day. Most research based results I’ve witnessed on Folic Acid is inconclusive – keep in mind study population is relatively small which can impact results. This very small dose Austin is taking might be having a very positive impact.  

Some may wonder, is she just seeing things or questioning how such a small dose can make such a difference, but one must keep in mind I am the “Austin expert”. For Austin, if a med or treatment really works I will typically see the results immediately, in things I can measure against his “norm”. This was very true when we were in the initial double-blind STX209 study, after just a couple of doses I witnessed what I call “Wow Factors” – something that Austin does that makes me step back and say “Wow – that’s amazing”.  With everything that is going on I am seeing “Wow Factors”.

In addition, I’ve always known a little exercise can be calming for Austin, just raising his heart rate through a walk (fast pace for him) is calming for him.  Austin’s heart rate through this ordeal has quite often been elevated.  Through our treatment on Thursday it was typically above 100, as high as 131, and averaging out around 115. They actually have a medical term for this “Tachycardia” for when a resting heart rate is above 100.  When we were discharged from the hospital I discovered this, it was listed in his “Ongoing Medical Issues”. For the most part we’ve had no behavior issues, if he has gotten mad or upset over something it’s been rare and not intense as behavior episodes in the past.

So who knows what is really going on, is it just one thing or a combination of many including his environment (no school, home environment typically never causes anxiety or hyperarousal, and yes he’s getting a lot of one-on-one attention from all of us).  Bottom line I’m not complaining, I’d just like to figure this out, and curious minds would like to know. 

It’s Hurricane Season…

When it rains it pours, and our household seems to be stuck in the middle of a category five storm. I hope the storm passes soon.

Yesterday, the Focus didn’t make it through the snow storm safely, it ran into the back of a full sized pickup truck.  Thankfully, nobody was hurt. Hope nobody cares that I’m going to use one of the kid’s phrases “It wasn’t me”.

This is my second Friday in a row of dealing with cars.  

Last Friday I went to take Gen to school and noticed the ignition was falling into the dash on the Flex.  My husband told me to take it to the dealership, I did. After I spent 4.5 hours there and $60 it was identified that the problem was due to the remote start we had installed in December. Today, I dropped the Flex off at Mickey Shorr this morning, to have the remote starter re-installed and I can only hope they will reimburse me for the charge at the dealership. Yes, they told me I should have brought it to them first but how the heck was I supposed to know the problem was based on something they did and not the vehicle itself. Really? Do I look like I am a Car Whisperer?

Today I’ve also been to three collision shops for the Focus, three estimates I might even get one or two more, I don’t know.  Looking for advice/recommendations from friends in the downriver area (if you don’t know what the downriver area is that probably means you’re not close enough to help).

Next on the agenda I’m thinking maybe I should research body shops for me, feels like I’m aging fast lately.  Good thing I color my hair because I’m probably snow white under the existing color.  Which reminds me, I had to cancel my hair appointment yesterday, I’ll have to figure out where I’ll put that back in (least of my worries, so if you noticed that there is a little white towards my scalp just pretend I was baking and got a little flour in my hair.) And I guess y’all need to view me with Austin Goggles on, according to him “I’m one hot momma!”

Now on a very positive note, Austin is doing well.  I slept on the couch last night just to make sure we didn’t have any adverse reactions (his room is right off of the living room). I can say he slept like a baby, wish I could say the same for me.  I’m a mother, that’s all I can I say, that mom radar kept waking me all night long, any unusual sound (real or not). I did joke with him that I was going to put a sleeping bag right next to his bed.  I didn’t, he didn’t want me that close J - would probably bring back too many hospital memories.

As for writing being therapeutic, lately I’m beginning to think I may need to write a novel. 

The hood actually had a small depression in it but after it being opened and closed a few times by body shops that's gone. You can clearly see where the trailer hitch went, passenger side light is a little cracked but still works. Since the hood was opened and closed a few times I hear a few more rattles. Busted fog light was there before, I think that happened while being parked at the JLA garage while I was working one night.

Man of Steel - Part II

Praying that everything continues, so far no problems, he’s doing really well.  They tirade up the dose every 30 minutes.  At 11:40 I made a made a mad-dash to the vending machines for a Mt. Dew for him and the Coney across the street for a plain hot dog.  Mom of Man of Steel flew and was back before the next tirade up of the dose (the elevators do slow me down a little since we are on the 13^th floor).

The really wonderful news is that if he continues on this path we will be done by 1 p.m. Hallelujah! Keep your fingers and toes crossed, and keep us close to your heart.

They have already scheduled our next three treatments and a follow-up with the doctor. The schedule is looking very full.  School had connected with me about home-bound services, only a couple of days a week for a couple of hours, I’m thinking about it.  Need to weigh out if I could fit it easily into the schedule, not sure.

While here I received an email message from “Our Fragile X World” on doing a survey on “Health and Technology” – isn’t that fitting as I sit in a hospital with a laptop on my lap.  Got that done.

No news will be good news, may not do another update until we are home, I'll just add it below.  Hugs, Sally

Update 2 p.m.

Home now, he’s happy, doing well!  Forgot to mention earlier the song “The Monster” was my wake-up song this morning I took that as a good omen. :-)

We have three more treatments like this to do, once a week for the next three more weeks.  Because he tolerated it well those treatments should go much quicker than today’s treatment. Hoping that this works and normal, even if it is a new normal, is right around the corner. 

Man of Steel

This morning seemed like it came early, far too early.

Last night I had prepared a few things, my overnight bag, a puke bucket for the Flex (just in case), mine and Austin’s electronic gadgets were all charged, packed away and I told him to pack his bag of favorite things.  When I went in his room this a.m. to check his bag it brought tears to my eyes, his needs are so simple, Power Ranger, Mickey, Goofy and Belle have made the journey with us. During the night, I did have a hard time falling asleep I thought of a few more things, Capri Suns (I know he won’t drink anything thing they offer him in the chemo room) and a change of clothes for Austin.

On our drive in we listened to a couple of favorite tunes, he picked “Hallelujah”, Mom picked “Waiting for Superman” it went with Austin’s “Man of Steel” Shirt.

During the ride in he conversed a little, he was entertained by the lights on the Motor City Casino (I guess we’ve never driven by before in the dark.) What’s weird is since our time in the hospital and afterward his speech seems to have improved, less cluttered, not so soft spoken, clearer, he’s easier to understand and I think the quality of his conversations have improved as well.  Now to be honest, I’d sacrifice the quality of his speech if we didn’t have to experience this.

He’s been amazing, as usual, blood pressure cuff on one arm (taken every 15 minutes), IV on the other, only thing he repeats is “I’m hungry”, “Do you want a kiss?”, he’s blowing me kisses and asking me if I’ve caught his kiss. .

They gave him Benadryl and Tylenol before we started. Nurse went over the med with me (most of the stuff I already new) but she told me something that made me feel a little better, the risk of Kidney Failure is just about non-existent for Austin’s treatment, this may happen when Rituximab is used to break up larger cancerous tumors, Austin doesn’t have tumors, it shouldn’t affect his kidneys. Rituximab is used as a targeted treatment for cancer, it’s not chemo, he won’t lose his hair.

After we got him initially checked in, situated in the Chemo room but hadn’t started the IV yet I went to Biggby for my large Mocha, Mocha.  The Barista at the register, looked up, recognized me and said “What are you doing here?  I thought you went home? You are not supposed to be here!” She was startled to see me, the not so good news (or maybe good news) only one more point needed and I earn another free Mocha, Mocha (and maybe another pound or two).

We’ve been doing the treatment for almost 60 minutes now, so far all is well.  Austin is blowing me kisses and I’m asking me if I’ve caught them. I’m gonna be catching a lot of kisses since we’ve got about 5 hours to go. 

Waiting to be checked in

Chemo Chair # 8, waiting for the next step 

And it begins, got the History Channel on

Another Day, Another Adventure

Oh how I wish it was just another load of laundry.

We have to move to the Rituximab treatment, the first treatment will start tomorrow at 8 a.m. It has to be infused very slowly so this will be a six hour process (allergic reaction risk for the first dose – it could be fatal – that’s why they take it so very slow).  It will be done in the chemo lab at the Josephine Cancer Center at Henry Ford Hospital in Detroit - he will be closely monitored.  From what I understand it’s the first dose that is so risky, there are other side effects as well and we’ll just keep our fingers crossed he doesn’t get them. 

We will have to have four treatments, the 2^ndtreatment is already scheduled for 1/23.

They will schedule what is called a "2^nd Tag Red Blood Cell Scan" (to determine if there is any part of his spleen left or hiding attached to another organ) in the near future but right now with his hemoglobin at 7.6 they have to treat with Rituximab, that has to be the first priority. If his hemoglobin drops below 7 he will have to return to the hospital. 

Austin, is Austin, immune to all that is going on, just a happy camper (isn’t that a blessing). We are holding up well, just keep us in your prayers.  

Simmer, Simmer ...

“Blood draw Monday ... how do I make my heart not drop when the phone rings? Feels like I'm always waiting, like we did in the beginning of our fragile X journey years ago, waiting for a diagnosis, afraid to answer the phone. BTW I don't need my furnace cleaned.” 

That was my Facebook status on this lovely Monday (just using that adjective trying to convince myself it’s going to be a lovely Monday).

Just me and Austin home and I said “Austin, I think I’m going nuts!” and being the wonderful son he is he kindly told me “I think you are nuts”. Yep and I'm just singing along to "The Monster"  http://www.youtube.com/watch?v=EHkozMIXZ8w and I do feel like my OCD is conking me on my head.  

I need to get busy but the ringing of the phone distracted me and brought forward just a little worry, that worry that is always lurking.  Its times like this I almost want to really enter Austin’s world.  When he’s anxious he buries himself in a routine.  I’ve often seen it displayed by pacing and spinning, always a pattern, three steps, a spin (always in the same direction). I can understand how it could be calming for him because he has to focus on the routine, keep it exact, and block everything else out.

Now realistically pacing and spinning will probably only make me dizzy. It’s not very productive, I’d later run the risk of being labeled a dizzy-broad (not by Austin, probably by my hubby) and we can’t have that happen.

I’m going to bury myself in the January newsletter for the Fragile X Association of Michigan (FXAM) group and then when I’m done with that I should move on to the website. The poor website has been neglected over the last month and a half, I need to make a lot of little updates, maybe explore what I could do differently to make it better. Hopefully, this kind of busy work will keep my mind a little more occupied and I can put that worry back where it belongs, on the back burner, on a very low simmer. 

Keeping my fingers crossed the results will be in my inbox shortly and they'll lessen the worry.  

CBC results are in and since the turn-around time was so short I'm just adding to what I previously posted.  Sadly, there is not less worry, hemoglobin count has dropped again, now at 7.9 (was 8.5, normal is between 13 - 17), red blood count has dropped to 2.47.  Let the song go on ... 

Maybe I need a straight jacket, face facts
I am nuts for real, but I'm okay with that
It's nothing, I'm still friends with the 

I'm friends with the monster that's under my bed
Get along with the voices inside of my head
You're trying to save me, stop holding your breath
And you think I'm crazy, yeah, you think I'm crazy

Update 7 p.m.

Well, I just couldn't make the call to the doctor today, 4 o'clock came and went and I just wanted a little more time to have a little less weight on my shoulders. Definitely Ostrich syndrome, just buried my head in the sand.

The doctor did call, a little after six, so the honeymoon is over. 

Wednesday we have an appointment with our surgeon, regular follow-up. Hematology has now scheduled us to meet with them at 11 am (at least I'll be able to make one trip for both appointments).  Hematology will want to do a scan to determine if possibly there is a piece of the spleen left behind. Like enodometiosis somewhere in his body there could be a piece of the spleen that was attached else where and is still acting like a spleen would act.  Now if they find something I'm not sure if that means there will be another surgery, part of the appointment is to discuss the next steps. 

I’ve been fired far too often

Another column from the past, but one that makes me smile. Lately he hasn't been firing me, he realizes (I think) that he needs me :-), even with all the snow days and not being able to go to school because of his health issues.

published March 4, 2007, The News-Herald

“You’re Fired!”

If I had a dollar for every time I’ve heard that phrase, I’d be rich.

Contrary to popular belief, this phrase did not originate with Donald Trump and his reality show “The Apprentice.” My son Austin, who has autism and fragile X, has been using this phrase long before “the Donald” ever did.

Like many children on the autism or fragile X spectrum, Austin frequently wanders into the world of verbal perseveration or echolalia. He’ll repeat a statement over, and over, and over again.

One of Austin’s strength is his memory, but not for things I would like him to remember. Instead, he remembers lines from movies, TV programs and commercials.

If there is a phrase that catches his attention, you can expect to hear it repeatedly. Sometimes they’re quite innocent and sometimes they’re rather inappropriate.

I’m fairly certain, “You’re Fired!” originated from the animated movie “A Bug’s life.” The context of it was humorous and caught his attention.

If only I could tap into that world of Austin’s, just think of what I could teach him. As it stands, that wonderful memory serves little function when I try to teach him some of life’s basic skills.  

However, I must admit that this might not be completely true. It may be in his mind somewhere but to this day I haven’t figured out a way to pull it out and put it to use.

He tends to use different phrases during different times, depending on his emotional state. If he’s happy, he often tells dad, “I’m gonna kiss your woman” or  mom, “You’re beautiful – NOT!”

If he’s a little frustrated or maybe the hormones in his ever-changing body are creeping out and he’s being a little head strong, I’m always “fired.”

When he’s angry it’s “nice butt” to which I often reply, “It is” as I glance down at myself. This reply often diffuses the situation a little.

He often gets frustrated when there’s a change to his daily routine. Lately, with the Downriver school snow days and breaks, I’ve been “fired” far too often.  

Sadly, I’ve not had much success at being fired.  I even tried being fired once.

It was during a time when I realized I needed to leave the workforce to better advocate for Austin.

Our work group had been out-sourced to another company and as the two companies tried to create what they called “due diligence,” they faltered when it came to what was due to their employees.

I had nothing to lose by speaking up since I’d decided to quit but hadn’t put in my notice. I pushed a few people’s buttons and came very close to being fired until a higher-level manager stepped in and put a stop to it. Unfortunately, the manager was protecting me but didn’t realize I wanted to be fired.

Shortly after that, I put in my two-week notice to quit, hoping that they would follow previous exit procedures for other employees. That is, within a couple of days, they would greet me at my desk with a box and kindly escort me to the door.  Once escorted out you would still receive your last two weeks salary.

Three days later, I was still waiting for my box. I actually called my manager asking where my box was to which he responded they wouldn’t do that to me.

So here I am, years later, being told I’m “fired” on a near daily basis and I’m still looking for that box, waiting to be escorted to the door.

There are days I wish I really was fired from my responsibilities, but in reality, I can’t even go on strike. If I did none of my kids would make it to school and being on strike with all the kids at home doesn’t sound too enticing.

My only recourse is to enter Austin’s world and pick up traits of echolalia. When he say’s “You’re Fired”, I respond, “Go ahead, make my day.”

I AM the Queen of England

There it is, it is on the internet for all to see so it must be true.

My first royal duty may be to send Katie Wright to the tower for her most recent piece on the AGE of Autism website, http://www.ageofautism.com/2014/01/katie-wright-on-autism-speaks-science-department-a-year-in-review.html

Sweetheart, I don’t care who you are or who your parents are. I don’t care if you are waging a war with Autism Speaks BUT if you’re going to talk about research and fragile X you better get your facts straight. You better learn that just because you see something in print it doesn’t mean it’s true.

I understand your passion when it comes to helping your child, it’s no different than my passion for my son (he has a diagnosis of autism and fragile X) and although I don’t have the resources available that you do, I do as much as I can to not only help my son but help others with children with or without a autism spectrum diagnosis.

From Katie’s most recent piece, “These consortiums appear to be a Two MILLION DOLLAR check to geneticists towards mystery drug development. Typically these studies research “core issues” (behavioral aspects - not total body autism) of autism. We cannot afford to go down the same avenues over and over again. We already tried this. AS spent 5 MILLION DOLLARS on the Fragile X /Seaside Therapeutics drug. The drug certainly helped those with Fragile X but not that the other 95% of people with autism. These rare chromosomal disorders are such a different animal; they do not translate to typical autism. Dr. Crawley mainly does genetic and behavioral research.

Yes, Reuters published an article on STX209, the Seaside Therapeutics drug, and deemed the trial a failure but I don’t think you did your homework sweetie.

Individuals with autism on the drug did improve and they improved in more than just the primary end point “social withdrawal”  and although the trial did not continue (lack of funding) when it comes to research to treat core deficits of a condition the research community as a whole learned a lot from this study.  What truly “failed” the study was the PLACEBO EFFECT, although this was crushing to many families who had been on STX209 for years (we were involved from April 2009 until July 1, 2013) since the private funding had dried up and Seaside couldn’t continue the study. As bad as it was, it is, I’ll not fault the parents for looking for, and seeing, hope in something that wasn’t there.  Until one has walked in our shoes (mine or yours), grasping at any therapy or treatment that may not only improve the overall quality of our children’s lives but the family as a whole, you can’t even come close to imaging what it can be like.  Hope is such a powerful thing.

I’d also like to address the other 95% you have mentioned, have they done their genetic testing?  Have they screened for Angelman, Rett, Klinefelter or fragile X syndrome to name just a few?  Have you had these tests performed? Did they do the DNA test for fragile X syndrome (chromosome or microarray analysis cannot be used to diagnose fragile X, produces far too many false negatives, only accurate at diagnosing fragile X when it is due to the deletion of the gene which occurs about 1% of the time)? 

Did you know that it is estimated that at least 80% of individuals with fragile X are mis-diagnosed or not diagnosed?

In June 2012, the first US Based population study revealed what many of us in the fragile X community  already suspect, the prevalence of fragile X is much higher than what previous, smaller studies, indicated. “Using genetic samples from 6,747 WLS participants, the team led by Seltzer, an expert on developmental disability and family life, found that 1 in 151 females and 1 in 468 males carry the fragile X premutation while 1 in 35 females and 1 of every 42 males fall into the gray zone.” Full details at: http://www.news.wisc.edu/20785

If one thinks we have an epidemic now just think of how these numbers may evolve 25 to 50 years from now.  Research on genetic disorders is critical.

My second royal duty might be to punish the numerous medical and educational professionals who remain ignorant and are living in the dark ages when it comes to fragile X.  Their lack of basic knowledge is unacceptable as noted in “Fragile Facts”, http://sfari.org/news-and-opinion/blog/2013/fragile-facts, it is frightening knowing that only 75% in the study cited in this piece admitted they never or only occasionally try to pinpoint the origin of a child's autism.  Come on folks, the gene was discovered in 1991, about 23 years ago, it’s time that professionals become educated, there is NO excuse for their ignorance.

Enough is enough, something needs to change! Knowing if there is a genetic reason behind a child’s diagnosis is critical in planning future therapies and interventions (this applies not only to fragile X but also to the other syndromes such as Angelman or Rett). Knowledge is power. And for those with fragile X it may also lead to accurate diagnoses for FXPOI and FXTAS (carrier conditions).

My last royal duty might just be to put an end to all this “tunnel vision” business Down Syndrome deserves as mush funding as autism, Angelman Syndrome deserves just as much funding as autism, Rett Syndrome deserves just as much funding as autism and yes, fragile X also deserves just as much funding. Our children, no matter the affliction often have the same needs and/or challenges. Create one organization, create one team that will collaborate to focus on simply helping our children with developmental disabilities as a whole, no matter what the cause may be, be it environmental or genetic. 

Monday, Monday - Jan 6

Gotta have a theme song and for those old enough to remember I figure “Monday, Monday” by the Mamas and Papas (http://www.youtube.com/watch?v=h81Ojd3d2rY) will do just fine, “Monday, Monday can’t trust that day”. I’m hoping when I finish this up later the numbers will be in and they’ll be good, until then I can only hope the day doesn’t disappoint us. Right now, in general, the more appropriate song by the Mamas and Papas might be “California Dreamin”, although I’d easily settle for @ the lake dreamin of a warm August day.

It’s Monday so that means time to do the blood draw. We opted for the lab at Wyandotte Hospital, only about 1.5 miles south of us and the most difficult part was getting off the street. I managed to get stuck and unstuck a few times. Genevieve, thankfully, came along with us which made it easy for me to drop Gen and Austin at the main lobby.

Like the turn-around time having a blood draw at the hospital, results are in at 11:57 a.m. Now I’m wondering if, or when, we’ll get a phone call.  Hemoglobin has dropped to 8.5 (from 9.9), white blood count has dropped a little down to 14.6 (from 15.9 that is a good drop), and red blood count has dropped again, down to 2.61 (from 3.08).

Well it’s time for me to get busy, occupy myself so I won’t just sit and worry.  Almost feels like I should be planning like I used to during an end of a pregnancy, always having a bag ready, ready to go (probably wouldn’t be a bad thing). Shortly we need to make it to our regular psychiatrist appointment, in Dearborn. Our psychiatrist manages Austin’s daily meds, nothing needs to change, a low dose of Abilify in the morning and Paxil in the evening seem to address his anxiety (at least taking the edge off) and stabilize his moods. We often have no changes but follow-ups are required to obtain med refills – just part of our norm.  I considered not going today but if we miss one of these appointments getting them promptly rescheduled is nearly impossible, it could be another two or three months before we get back in.  I guess in reality, it wouldn’t be the end of the world if we didn’t make it but I can be a stickler for rules, appointments and promptness.

So once again I’ll ask all to keep us in your thoughts and prayers.  No news will be good news, no news will mean we didn’t get a phone call, we didn’t end up back at the Henry Ford Hilton on West Grand Blvd.

August Dreamin - Warm and Happy Thoughts!

Hugs, Sally

Austin aka Peter Pan

At times life is so simple and yet so difficult for Austin.  Simple in that for him, in his home environment it’s perfect, he can watch Barney on YouTube as much as he likes or enjoy all aspects of the History Channel in the privacy and comfort of his own room.  There is very little drama and only a little change when we ask him something he doesn’t want to do. It’s his normal, it never has to change, and this is what I have labeled Peter Pan Syndrome (a result of his fragile X and autism). Home, his room is his Never Never Land.

When we were involved in the clinical drug trial for STX209 (Arbaclofen) from April 2009 – July 1, 2013 he was a little more spontaneous, a little more adventurous, with its absence he doesn’t want to leave Never Never Land.

December changed many things, with his new medical history we’ll no longer be able to participate in any clinical drug trials.  On one hand I’m thankful the STX209 study ran out of money and ended when it did, with his onset of Warm Body Hemolytic Anemia that could have had a drastic impact on the study results even though it wasn’t because of the study med. 

I haven’t rescheduled our speech and language communication study in South Carolina, when I do, that should be a good sign that I believe we’re out of the woods.  With the study criteria I’m not even sure if that will happen, the age cap on the study is 22 years old and Austin will turn 22 in March.

We are both enjoying home, we are both reinventing our own normal – I just haven’t quite figured out how to manage my new normal with a little less worry.

Every Monday we have a blood draw, every Monday I wait for that email message that tells me test results are available, every Monday I look at the changes and wonder will I get a phone call or are the numbers okay.

The Hemoglobin count is fluctuating just a little between the high 9’s and low 10’s. Numbers are still way off from normal (there goes that word again) but like everything else I expect we will have a new normal. I believe it’s a good sign that we’re still hovering around the numbers we were discharged with.

His white blood count has elevated since the first draw on 12/23, we were at 11.4 (high end of normal is in the 10s) and the last result was 15.9. No phone call last week so I’m assuming that it’s nothing to be alarmed about but that doesn’t mean I can make the worry stop.

Worry will just need to be something I learn to cope with, something I’ll need to put on the back burner but I have the feeling that the burner will still be on low.  Worry will just be a part of my new normal.

Spleen removal (splenectomy) has a 67% chance of correcting Hemolytic Anemia. A splenectomy itself comes with its risks (thankfully we passed the biggest risk with the surgery, the surgery like any surgery can be fatal) for treatment of Hemolytic Anemia, the first two years will be the most critical, the onset of something that looks like the flu, overwhelming post-splenectomy infection (OPSI), could be life threatening if not acted on immediately and appropriately. There is also a probability that he could develop Systemic lupus erythematosus (SLE), if it happens it’s typically in the first year. We just need to hope that the odds are always in our favor.  If the splenectomy doesn’t fix the Hemolytic Anemia there is one other treatment that comes with its own set of risk factors (or should I say worry factors) Rituximab. Hopefully we’ll not have to go there, but if we do we would have no other choice but to try it.

My biggest worry is because of Austin’s inability to communicate to me any aches or pains, he doesn’t understand what is normal or not normal, when it comes to health and how he feels.  With that I truly fit the label not of a “lost boy” but of a “lost mom” because your guess might be as good as mine. For now there is often a peck on the forehead, many times during the day, just to be a general check that there is no fever.  I’m always looking at his color, looking for changes, looking at the whites of his eyes – are they still white? I look at his urine (when I can catch him in time to ensure he doesn’t flush) and it looks a little darker than what I would consider normal but is this his new normal, it seems like it’s looked like this for a long time.

Throughout the hospital ordeal he always gave me the thumbs up and said “I’m fine”, when I really didn’t think he was fine. Just now I tucked him into bed and asked “How do you feel?” and he replied “Just Dandy”.  In the hospital he was always working towards his “end game” he just wanted to go home and he’d tell the doctors or the nurses whatever they wanted to hear that would get him home. 

Now that he’s home his “end game” has changed very little, he wants to stay home and he’ll tell me whatever he thinks will keep him home.  Through everything he went through he never cried once, he never complained of pain, he never cried out in his sleep or moaned when moving. When he got sick he only apologized, he never told us before he felt sick, we never knew until after it happened. 

So our biggest challenge now will be in managing his health. How do we do this without constant worry, I’m not sure we can do that.  Worry will just have to be a part of our new normal, we can only try (hope and pray as well) to ensure it’s a very small part. 

Austin - December 20, 2013

I let Austin go to his school holiday party today, it was a very big adventure for both of us.

He really wanted to see his teachers, aides and friends, he really missed them and enjoyed all the hugs.

He was so funny walking down the halls to go to the classroom where the party was, back to his old self in one way using lines for his favorite movies. The tone in which he said "I'm back" made me chuckle.

We only stayed about 45 minutes, he tires easily, but it was 45 minutes well spent.

Home Day 2 - December 19, 2013

Damn if 5:30 am didn't roll around and I was wide awake.  I thought it took 21 days to form a habit, I had only hit the 15 day mark. 

When Austin was told we could go home he was so very excited, he did a happy dance.  I had tried to be as prepared as possible moving some of our personal belongings to our storage locker (aka the Flex) in advance. He did very well waiting, the longest thing we had to wait for was the nurse to remove his IV port and then Dad to return to the room (he went for a walk).

We were fortunate that we did not have to wait for transportation to take him to the exit that would have taken far too long for Austin.  He left the hospital the same way we came in - Mom pushing him in a wheelchair. 

Austin was greeted by his lovely sisters when we got home and his face just glowed with happiness. The first thing he did was to go into his room, turn on his TV and sit in his chair, I can't remember exactly but it might have been to his favorite channel - The History Channel. 

Mom, of course, after she unloaded the storage locker, mentally (and shortly afterward verbally) started ticking off things in her head about what needed to be done. She was naturally responded to with the girls and dad chanting "Mom's home" and a few eye rolls. Once in a research study I participated in for fragile X carriers I was told I was slightly OCD, I naturally didn't agree but after this adventure I do believe we've got to call the kettle black. 

We gave Austin a little time to rest and just enjoy his room while Mom let some of her OCD tendencies take over, putting everything away from the hospital, venturing to her office (the laundry room - which put her head in a spin cause dirty laundry wasn't sorted into neat little piles) and changing the sheets on her bed. No offense honey, but beside being able to sleep once again next to you I wanted fresh, crisp sheets. Note to self - If I do a social story on laundry make sure to include clean the dryer vent after every load :-). 

I did get Austin into the shower and washed him up really well.  To wash his hair I had to balance on the edge of the tub because he towers over me.  The poor guy has bruises all over his arms from blood draws and IVs, and his abdomen has bruises from all of the incisions.  He was ready for bed by 7:30 pm. It was sweet to be able to tuck him into his own bed.  That night I felt like the mother of a newborn, a little anxious, I had to check on him a few times during the night. 

Wednesday, Natalie and I tackled a few things on Mom's to-do list, tree isn't up yet but the living room and kitchen are a lot closer to Mom's specifications than the night before. On top of the list for mom was going through the fridge and bread basket, getting rid of a few things that expired (I do believe we had a few science projects going on). We've decided when Austin is up we need to have a sentry on the first floor, that or put locks on all the cabinets and fridge or he'd never stop eating. He enjoyed a visit from Gram and Gramps.  He is still being very polite and calm, hasn't called anyone a "Dumb Ass" lately (thank you "Pawn Stars"). 

Friday his classroom is having their holiday party and if all goes well I will take him in for a very brief period.  He keeps telling me he misses his friends and I don't want to have to make him wait until after the New Year to see them again. 

Our first appointment is scheduled for Monday, Dec 23, two other appointments already on the calendar for January and today I have to call to make another appointment.  

I've re-written our annual family newsletter (well mostly a re-write on Austin's section) and have finally gotten back to our Christmas cards (a tradition for me since I started doing the cards for my mother when I was a teenager - normal is good).  The tradition has continued but with a twist, every year I get to hear Jer complain about how much money I spend on stamps, although I do think he might skip complaining this year. Late November I thought I was on track - that changed quickly in December. The Canadian cards typically need about two weeks to get there in time for the holiday. I had them all addressed just needed stamps and Jer to proof the Christmas letter so I could print and stuff (he does a little more than proofing, sometimes he edits, one year I should do a bloopers edition putting everything in I wasn't allowed to put in previous Christmas letters :-)). 

I hope to have the tree up by this weekend, of course my husband says just put it up with a few lights - not gonna happen - when it goes up it will be fully decorated (hmmm, am I hearing OCD again).  I've got to do an inventory of what I have gotten done in the way of shopping, like the Christmas cards I thought I was ahead of the game but now I can't even remember exactly what was on the list in my head. 

Sadly being home doesn't take away all the worries, it seems like we still have a sizable recovery period to complete.  With Austin my biggest worry is his inability to communicate to me if he is not feeling well.  He doesn't really understand what is or is not normal when it comes to health so it's up to me to be his watch dog.  Hoping I don't miss anything. 

Thank you all for being part of my support team. I didn't (and don't) have the time to respond to each and every email or facebook post we've received but I do want you to know I've read and appreciated each and every one of them. You kept me focused and strong during the good and bad days. Thank you so much!

Hugs, Sally

P.S.  And a big thank you to my husband for letting me complete my old normal, pick on him because of a few of his habits. 

Austin - Day 15 - December 17, 2013

Mickey told me he was lonely.  We've been here long enough that the Christmas stuff is on sale :-).

 

He ate a half bagel this morning and it's stayed down, if we're here much longer we'll try a grilled cheese.  Should be going home today, IV is off but port is still in.

 

hugs, Sally

We did get our discharge today, it was so nice to send out that update "We're Home!" 

Austin - Day 14 - December 16, 2013

Two weeks have now gone by, to say that we both miss our old normal is very, very, much an understatement.

Yesterday we were able to be on a clear diet with a small twist.  Austin has specific tastes and likes when it comes to food - textures, smells all come into play.  His clear liquid diet consists of Apple Juice, Hot Tea, soup broth, Jell-O and Popsicles.  In the home environment we've become accustomed to his likes/dislikes, and yes we cater to them to ensure he's eating.  Breakfast is always a Grape Juicy Juice (in a specific glass) and a lightly toasted bagel with cream cheese. He will only drink Grape Juicy Juice - I've tried others but he just won't drink it, once we were close to running out and there wasn't any on the shelf at the store.  I bought a different brand but put it in the Juicy Juice bottle when Austin wasn't looking - I couldn't fool him, he wouldn't drink it. Brought in Juice from home but now I think he doesn't like things in Styrofoam, always something :-).

From his clear liquid tray he only eats the Jell-O.  I got permission yesterday late afternoon to give him Capri Suns and just a few pretzel rods.

A few days ago the repetitive speech was all love for mom, now its two things, "I'm hungry" and "Can I have a snack?" Boy does that get old fast but I'm taking that as a sign of improvement.

He's not feeling the love for mom lately, and believe me at times it's mutual. If he starts giving me a hard time I just leave the room for a little bit (a little time without mom is not a bad thing because he misses me).  He was very grumpy to me this morning, getting agitated and at the time he didn't have much to be agitated about (shortly after he did).  Nurse Assistant poked and poked him this morning, he didn't want me to talk, he didn't even want me there so I went for my morning Mocha, Mocha, and I let her poke away (bad Mama).  When I return I find the nurse in our room trying to accomplish the blood draw, she did but of all times to forget to label the bottles it would have to happen today.  So she had to redo the blood draw shortly afterwards.

The anti-nausea med just knocks him out, I think that creates some of his grumpiness lately, to me he was a much happier, cooperative kid before that med was added.  I don't know anyone who is fun to be around when they are overly tired. He's not complaining about any pain, and when I touch him there are no whimpers, so we haven't given him any pain medication since last night (not sure if it's the right thing to do but he seems to be doing okay, we'll see how today goes, so difficult to judge).  His medication cocktail of late is huge, before we entered the hospital he was only on one Abilify in the am and one Paxil in the pm.  He takes six pills in the morning now. How much does anyone want to wager that Jerry, the engineer who has spreadsheets for everything (but doesn't know how to operate our new washer and dryer, who likes everything to be exact) is going to be miffed that all his budgeting for our medical flexible spending account was just a waste of effort?  I can't wait to see what the co-pays are going to be, his Abilify alone is $50 a month, I'm so thankful we can manage, now that he's over 18 it comes out of his Social Security Income (SSI) funds and I'm so sad for many of the parents with children with special needs who have a difficult time managing.  I know parents who have had to give up a job so they would qualify for assistance and Medicaid for their child because they couldn't afford the cost of medications (sad world we live in at times).  Hoping by the time we leave the hospital our med cocktail will be reduced by a few meds.

Yesterday Jerry and I both took a break together, let's call it a date (even though it was very brief) went to Sala Thai in the Eastern Market Area.  Wow!  Did my mouth ever enjoy that wake-up, wonderful spices and tastes, it will make it easier today to deal with the limited choices for food at the hospital. Sad that they took the Little Caesars stand out of the main concourse (they only want "healthy" food) it would only have provided a little more variety for me.

Yesterday Austin was seriously freaking me out by how much and severely he was avoiding eye contact, weird, weird, and weird. He'd have his eyes way rolled back into his head or way off to the far right or left (I'd make him look at me and he briefly would but then he'd quickly avert his gaze).  He was alert and would respond to all questions, all requests - just plain weird.  I have seen him on occasion briefly do this before, very, very rare, but on Sunday it was pretty intense.

Genevieve made it home safely from Milwaukee. She came very close to getting Austin his five goals he told her to get the last time he saw her - 4 goals and 3 assists (I think on the assists, not sure if one of the assists was credited on the score sheet). In her last game she went into the boards hard, knee first.  Same knee that she got carted off the ice on a stretcher once at the Suburban Ice Arena.  She calls me from Milwaukee upset and I'm frustrated because all I can tell her is ice it, take Motrin and come home.  I'm thinking it's just badly bruised again, if it's anything else I'm guessing that's going to have to be added to dad's plate since mom is a little busy here. And when I ask dad how it is, I'm told it's sore to touch, one day at a time, hoping Jerry will moderate it closely.

Have I told you lately how much I hate this kind of busy, always waiting, waiting for one test result or another, waiting for doctors to make rounds, never knowing the time, waiting, waiting, waiting.  Thank goodness for technology, it's provided a distraction, otherwise I'm betting I would have easily read all eight or so books in my to-be-read pile.

Since its Monday I'm hoping we'll see our hematology doctor today, our hemoglobin count is pretty stable, 10.3 yesterday (day before it was 10.4 and I'm not worried about such a slight drop). I believe she'll dictate how long we'll be here.

Well the chapter that marks our two week anniversary is more than long enough.  Happy thoughts folks, be good and do good, especially for others.

Hugs, Sally

Evening Update 

Monday morning was a "he loves me, he loves me not" phase and I was feeling a lot more of the NOT.  Stepped out of the room a few times in the morning because he was agitated towards me.  Ah, the rewards I receive for my time spent with him, I'll just chalk it up to lack of sleep and too many med changes in a short period of time.  I still don't have the specifics on what he had an allergic reaction to, I do know post-op they gave him Dilaudid, and shortly after that they gave him hydrocortisone after giving him his Dilaudid dose. Disappointed that no one discussed this with us.

The surgeon was by early in the morning, as of 3:50 pm still no sign of hematology.  Last count went down a little, 9.6, much more of a tenth drop we saw the other day. Potassium very low but I convinced nursing staff to just order the pill form, I know it's big but he can swallow it with no problem, he will not drink any drinks if you put anything in it

They took away the anti-nausea med that completely wiped him out, very, very tired, may have been affecting his mood as well, in the am, he's been having Capri Suns and pretzel rods, and not a meal for a champion but it was staying down.

Difference in mood from morning to afternoon was huge, he's lucky he changed his tone or maybe I would have slept in my own bed Monday night.  I had a backup plan in place, I would have left his room a couple of hours, just hung out in the waiting area, just enough time to experience life with mom or dad not by his side.

Feels like a long day, every day, because there are always numerous interruptions, heparin shots in the stomach every 8 hours, vitals every four, IV bags running out and needing to be changed, med schedule and it seems like nothing is synced up. Such is life....

They caught me quite by surprise at 5 pm today when they dropped discharge papers off, Nobody told me today he was going to be discharged, he still has an IV in for some reason I thought they'd give us a period with no IV.  I thought they'd give me a heads up. YES we want to go home, YES we want to sleep in our own beds. 

I insisted that I feed him first, he had one chicken tender and about four waffle fries, one chocolate milk. We made sure he ate slow, small bites and he really enjoyed his meal. Natalie and Dad were with us at the time so Natalie and I made a subway run and left him with Dad.  Before we returned to the room Austin tossed his cookies just minutes after eating and I refused the discharge. It was rather nice to miss that episode, glad Dad got to experience a small part of Mom's life lately.

He'll go on the anti-nausea med again tonight and if they insist on discharge I'll do it early in the day, hoping the med will get his home with no problems (I love Austin bunches and bunches but I'd rather he didn't toss his cookies in my Flex :-)). I'm just hoping that somehow I'll sort out his food issues (at least at home I can have better selections available that I'll know he can eat, will eat, like kids yogurt). I'm just not comfortable with an evening discharge knowing there are things I need to take care of like all the new scripts being filled - what if the pharmacy doesn't have them in stock, I don't want to be under the gun knowing I've got to have them for first thing in the morning, I'll feel much better starting the re-introduction to home in the daylight, I'm not sure if we'll still be dealing with nighttime incontinence or vomiting but I want to be prepared to deal with it.

So, my many friends with children on the Autism/Fragile X Spectrum if you have a hospital stay, planned or on planned, from the start make sure you layout the discharge plan that will work best for you and your child

Hemoglobin count is staying in the high 9's low 10's, hematologist thinks we're okay on that level and we have our first hematology appointment scheduled for Monday, Dec 23,  at 1 p.m. I think we'll have a follow-up with our internal med doc as well and we'll be on steroids for about 2-3 months.

Once discharged keep your fingers crossed all goes well and we don't end up back here.

This was bugging me, not the best picture but displays a little of what he was doing with his eyes, when he'd talk to me they'd be looking way up, avoiding eye contact at every opportunity.